Viewpoint Survey on stigma and discrimination

1. What is this research?

Viewpoint is a major annual survey measuring anticipated and actual experiences of mental health stigma and discrimination among adult mental health service users across England. We work with 1000 adult participants across five areas of the country each year. It is currently part of the evaluation for the Time to Change programme and is carried out in partnership with the Institute of Psychiatry at Kings College London. Researchers at the Foundation have worked on the project since it began in 2008.

2. Why is this research important?

87% of people with mental health problems experience some form of mental health stigma and discrimination. Stigma and discrimination can worsen people’s mental health problems, delay access to help and treatment and lead to social isolation. People with mental health problems are less likely than the general population to have decent housing, be in employment, be socially included, or have good physical health. Negative attitudes towards people with mental health problems contribute to all of these issues.

The findings from the Viewpoint Survey will raise the profile of this topic whilst allowing us to understand reported discrimination and stigma in order to target anti-stigma campaigns more effectively. Our research is contributing to an increasingly large body of work building an evidence base on how best to address mental health discrimination and stigma. The survey tool used in Viewpoint, designed by researchers at the Institute of Psychiatry, has been adopted in countries across the world to evidence reported discrimination and alongside public attitudes survey findings these data are helping to build global alliance of anti-stigma activities and partnerships.

‘”Stigma and discrimination against people with mental health problems are often common, severe and unlawful. Such experiences can deter people with mental ill health from joining the workforce and from other forms of social participation. The Viewpoint Surveys are therefore an invaluable way of knowing if we are making real headway in England in attacking these pernicious forms of social injustice.” Graham Thornicroft, Professor of Community Psychiatry, The Institute of Psychiatry at Kings College London.

3. What are we doing?

We are interested in what people’s experiences of discrimination look like in England and how common it is. We are also keen to see whether the amount of discrimination in England is changing over time: this will help us to understand whether or not the Time to Change programme is having a positive impact. We have run the survey each year since 2008 and will continue to run the survey until 2015.

1) Each year, adults receiving secondary mental health services through five different NHS trusts are invited to take part in a telephone interview.

2) People who want to take part are telephoned by one of 22 trained researchers, most of whom are peer researchers with personal or family experience of mental health problems.

3) During the interview, participants are asked whether they have experienced discrimination as a result of their mental health in a number of different life areas over the past year such as housing, employment, family life.

4) We compare the data each year to see whether discrimination is getting more or less common for people in contact with secondary mental health services.

5) The main project is a quantitative study but we have trained a small team of peer researchers to conduct semi-structured qualitative interviews over the phone. We intend to use this data to further understand experiences of discrimination and address the following key questions:

What types of behaviour are most commonly reported as discriminatory?

How does discrimination vary across different kinds of relationships?

How far are the messages of the Time to Change campaign targeting the types of behaviour reported?

Viewpoint is an important study which tackles stigma and discrimination. I am part of the team who are doing the qualitative study and I have attended some very good training to do this role. By doing the qualitative interviews, I have learnt about the types of behaviour most commonly reported as discriminatory which is often very sad. I have also learnt qualitative questioning techniques and how to use the interview recording equipment. I am very glad to be part of the team who do the Viewpoint interviews. I will continue learning when we analyse the data.” Katherine Barrett, Viewpoint Interviewer, The McPin Foundation.

4. What is the current status of the project?

Viewpoint Survey has finished after funding through Time to Change, ended. The last survey ran in 2014 with results reported in 2015. A number of publications from Viewpoint have been produced. We have also presented at a number of conferences and plan to publish more work in the future:

‘Discrimination against people with a mental health diagnosis: qualitative analysis of reported experiences’ in the Journal of Mental Health [http://informahealthcare.com/doi/abs/10.3109/09638237.2014.880408]

‘The effect of disclosure of mental illness by interviewers on reports of discrimination experienced by service users: A randomized study’ in the International Review of Psychiatry [http://informahealthcare.com/doi/abs/10.3109/09540261.2010.545367]

5. What next?

We have sought continuation funding for Viewpoint Survey and remain committed alongside our colleagues at the Institute of Psychiatry to attempting to re-start the surveys in the future. Our immediate plans include completing the publication of data from Viewpoint and working with the interviewers to produce a methodological report including a summary of their experiences as interviewers over 8 years of data collection, analysis and report writing.

6. Who do I contact for more information?

You can contact the team working on Viewpoint at the McPin Foundation via contact@mcpin.org